Living In Defiance Of Early-Onset Parkinson's Disease

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Once More, With Feeling

I’ve been having some problems with my deep brain stimulation system (the electronic system in my brain and chest that sends a trickle of current to a particular spot in my brain that, for reasons not well understood by medical science, helps to control the most severe of my Parkinson’s symptoms). It was first implanted in the summer of 2011, and since then I’ve had three battery replacements. This is a bit abnormal; the batteries are supposed to last 3-5 years.

It turns out that there were electrical faults in the device electrodes located in my brain, and rather than just replacing the battery again, I decided to replace the whole thing. So, on Tuesday, February 23, 2019, I had stereotactic brain surgery again to replace my malfunctioning DBS system.

No big deal, I thought – I had done it once before, and I remembered it as a relatively easy procedure to recover from, as far as brain surgery goes. I discounted the fact that I’ve had eight years of progression of Parkinson’s symptoms since the system was first implanted, and the total time in those eight years that I’ve been without the support of the device could be measured in minutes. Needless to say, it hasn’t gone quite as easily as I anticipated.

The surgery itself was as trouble-free as could possibly be. My neurosurgeon and his team again anticipated all contingencies, and had planned the procedure well in advance. They had some existing hardware removal and clean-up to do, but this was definitely not their first rodeo, and they knew what to expect. He even warned me that I would be a little more sore than the first time and would have larger incisions, because of the need to wrestle the old system out, wedge the new one into place, and make sure nothing was flapping before he zipped me back up again.

The procedure was slightly different than the first time – apparently, I got the good drugs not long after the surgeon started shaving my head, because I don’t remember him finishing or installing the “halo” (the metal frame that held my head still during the procedure). I vaguely remember being awake during part of the procedure, but I don’t remember being asked to participate. I don’t even have a clear recollection of my time in recovery, other than the beeping of the electronic devices that spied on my vital signs.

My first clear memory is of the soreness in my head and chest, and of being unable to move. I expected the soreness, but my lack of mobility scared me. Although I’ve had Parkinson’s for ten years, for the last eight I’ve had at least partial symptom control 24 hours a day, 365 days a year. Coming out of surgery, I was without DBS and without medication for the first time in eight years, and I was extremely uncomfortable.

I should have been expecting it, but I had unrealistic expectations based on my memories of the original surgery. I periodically have problems with dystonia (muscle cramping that lasts for hours), but now I was dystonic constantly. My body felt locked in a vise, and I felt the first stirrings of panic.

Medication didn’t help much, either – I’d grown accustomed to the constant trickle of electricity in my brain, disrupting the symptoms of Parkinson’s disease. For the first days following the surgery, I took about twice the amount of PD medication than I was accustomed to, with no noticeable effect.

Amy has an amazing capacity to rise to the challenge, whatever it may be, and she did with this one too. She was my advocate and protector in the hospital, making the point several times that I wasn’t experiencing problems with the surgery, or with surgical recovery in general; this was unbridled Parkinson’s, and the potential solution was to get the DBS system working again as quickly as possible. My kids were there, too, helping me keep my mind off my discomfort. I spent a sleepless night following the surgery trying not to let the panic overwhelm me, struggling to find a comfortable position, and wondering just how long I could stand the stiffness, rigidity, dystonic cramps, and tremors before I went quietly crazy.

After a quick consultation of the interested parties the next morning (arranged by Amy, bless her), the neurologist decided to go ahead and turn the system on, even though there was probably still some surgical inflammation of my brain around the implanted electrodes. The technical rep from the device manufacturer came by and, using settings provided by the neurologist, turned the system on at a low level.

Within seconds, I felt a lessening of the rigidity and stiffness, and I could even do some half-hearted finger taps. The low-level stimulation gave me some relief, and I was able to move and walk well enough to be released from the hospital.

Since then, I’ve had the system reprogrammed, and it’s functioning more normally. Tomorrow, two weeks will have elapsed since the date of the surgery, and I’m recovering adequately. My neurologist has many more programming options available to him, and will start tweaking the system to optimize the effects and minimize side-effects. And I have a renewed sense of gratitude for the marvels of modern medicine, and a reminder of how much I have become reliant on those marvels.

I’d grown a little cynical about the value of the various treatments and interventions, and had even started to think I could do without some of them. The medications are expensive and annoying to take every three hours, and having regular battery replacements for my DBS system is a recurring risk that I could gladly do without. Even under the best of circumstances, the treatments don’t always work, and the symptoms regularly break through.

The panic that I felt as my body refused to obey me and it became impossible to move, to speak, or to think reminded me in stark terms – it could always be worse. For many, it IS worse. For me, it will eventually be worse. But for now, I’m doing well, and the future can take care of itself.

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12 thoughts on “Once More, With Feeling”

Praising God, Corey, that the surgery was successful and the DBS is back “on” and that you were able to get back to what you were before the surgery! You and Amy are miracles to behold! I keep you in my prayers. Keep writing! (I’m embarrassed to say that I am just now reading this post–I usually get right on them.) Love and hugs!

Corey, I felt my anxiety grow as I read this. I recently read another dear friend’s post that sharing our struggles actually strengthens us all. I believe that’s true. I certainly sensed that by the time I reached the end of your post. Thank you for entrusting us with this; for your honesty and tenacity. I am praying for you especially and for Amy and ‘the kids’ as well. Love you, man!

Our prayers are certainly with you and your family. We pray that your recovery continues to advance so you can feel more comfortable. Sometimes going through a little (or big) setback can make us more grateful for educated people, the procedures, the medications, and life and our family even though we go through the deep trauma. We pray for the fortitude and strength to hang in there as your recovery progresses.

Corey,
I so appreciate this post and its frank telling of an uncomfortable event. Uncomfortable? Maybe more like downright awful. Bless those around you as they help and may the ‘miracle’ of DBS continue to work its magic for many years to come. I’m so grateful things are on the upswing and look forward to seeing you in Lubbock on April 5th.
Lorraine

Corey, it is always interesting and usually humorous to read your blogs. This one, however, made my heart start to beat faster as I empathized with your medical experience. I felt a deep relief to know that you are back on track, albeit a crooked one! I am also gratified to see, once again, how God uses the brilliance and expertise of those gifted surgeons to enable us feeble mortals to live, in spite of wars within our bodies. You are fortunate to have Amy and the children (and a host of invisible prayer warriors) to share in your struggles and triumphs.

Wow, Corey – I have even greater respect for you than I already had for having chosen to go through this latest round of medical intervention when a new battery would have been simpler to get. Hats off to everyone involved (esp Amy) and may this give you a much better length of freedom than ever before. You still amaze me – just as you did when we worked together oh so many (many!) moons ago!
~ Wendy

Corey, What an amazing article. My heart goes out to you as you deal with all of these unknowns..You are so blessed to have a wonderful wife and family as a support system. My love to you all. Ali Yantes